Thursday, June 28, 2012

So last Sunday night Brandon and I shared our testimony with our Fairhaven Baptist Church family. It has actually been a very emotional week - reliving the journey to relive the journey. There were so many emotions, so many fears, so many tests and so many tears that I would have loved to have never revisited. But in all honesty, now that it is over, I'm really glad to have had a reason to honestly dive back into those first few years after Camilla began having seizures. It was quite theraputic to look back and see where we were as compared to where we are now and to realize just how God's hand was guiding us all along. I'm so thankful for the love, support and encouragement that was shown to us on Sunday. We do feel led to share Camilla's story with others and Sunday was a very important step in leading to that goal, if for no other reason than for us to see if we could handle it and to see if there would be a message that would reach people no matter the similarities or differences between their story and ours. We had originally intended to close our talk with a slideshow of pictures of Camilla but as time was running out I still couldn't get the music to load properly so we scratched it but I thought I would share it here - I know how to do the music here :) Oh and it is worth noting that we are past the 3 month mark (March 26th-June 26th) and we have still not seen a seizure!!! Praise God from whom all blessings flow! This is the longest she has been without seizures since 6mo old(and there were only 2 other breaks-one for 5 weeks and one for 3 months)!!! "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Monday, June 11, 2012

Sunday, June 10, 2012

Each year Children's Hospital hosts an event for their patients and families. Last year they rented out Alabama Adventure for an evening and this year it was the Birmingham Zoo. They partnered with Chick-Fil-A to provide an absolutely wonderful evening for these special kids. Not only was the weather perfect, not hot and a breeze blowing, but there were no lines anywhere and it was like our own personal zoo experience. The staff was so friendly and really tried to help the kids enjoy the animals, which is something Camilla has never been able to do in the 3 or 4 other trips to the zoo we have made. She especially noticed the flamingos, giraffes, elephants, tiger and gorilla. My favorite memory was during the sea lion show when he hopped up on the side of the pool and waved and barked and Camilla waved and barked back (amazing how they did both so similarly lol). The Children's Hospital clowns were there painting faces and Chick-Fil-A was handing out stuffed cows, gummy bears, free drinks, paper fans and cow hats every time you turned around. Crosby's favorite part was of course the 'choo choo' but he really enjoyed the animals as well. Thank you Children's Hospital of Alabama, Chick-Fil-A and The Birmingham Zoo for a wonderful 'Dreamnight at the Zoo'!

Friday, June 8, 2012

I'd like to apologize - I've been slacking on my updates and there's really no good reason. Except, of course, if you count that fact that it's summertime and my babies and I have been too busy having fun to do much else! So far our days have been filled with the park, slip-n-slide, swimming, Vacation Bible School, sleeping late, the zoo, golfing, fishing and naps! I can't wait to see what the rest of the summer holds :) As for Camilla - SHE IS DOING GREAT! We still have not seen any seizures and even though there was a small amount of activity in her right parietal lobe on the EEG we are thankful for 2 1/2 months of seizure-freedom. Once we reach 3 months we will be celebrating the longest she has gone without seizures since she was 6 months old (the one other seizure-free period was at the beginning of the Ketogenic Diet when she was about 10 months old). She has been sleeping so well these days now that the 'white noise' has been quieted in her brain that in the past has robbed her of sleep and so many other things. The first week out of school she was sleeping until 10:30 each day and she is now averaging waking about 9:00 each morning. The general rule of thumb in our house - if Camilla's brain is sleeping DON'T WAKE IT UP! I really believe her body and brain are catching up on some much needed rest. During the day Camilla is showing signs of being more aware than she ever has been before. She just seems to be more 'present' in the moment with us and seems to be processing our words, asessing situations and reacting so much more typically. These characteristics are allowing her to make great strides in many areas but the most noteable being in potty-training (and Mom lets out a big WOO HOO after almost 7 years of diapers). Camilla is consistently letting us (and others caring for her) know when she needs to go by saying 'abath'. We are to the point where we are beginning to trust leaving the house with her wearing panties and there have been very few accidents to date. We are so proud of her and she is proud of herself as well. There are so many positives to mention that I couldn't possibly remember them all but I'll try to list a few: she is more steady and not shaky, she laughs a lot, she plays well and interacts with Crosby, she throws fits when she doesn't get her way (yes believe it or not this IS a positive), she is learning to dress herself, she continues to eat well, she helps me around the house (throwing things away, washing dishes, cleaning up spills and loading/unloading laundry), she is playing with toys appropriately these days, and the list could just go on and on. It seems like every day we are finding new accomplishments, large and small, to celebrate. I will mention one negative, Camilla has been very quiet these last couple of weeks. We are having to provoke her to get her to say much of anything and we certainly aren't hearing any new words. Even with the potty-training, the first couple of weeks she would constantly say 'abath' but she is now coming and taking me by the hand and leading me or just getting right in my face and staring in my eyes to let me know she has to go to the bathroom. We are very confused and frustrated by this silence. Back to the positives - she is adding more signs to her vocabulary. She will now regularly sign 'please' and 'thank you' in addition to her usual 'more' and 'eat'. We will begin adding two more new signs next week (it seems that focusing on one or two at a time for her to learn and do works best even though I do a lot of signing throughout each day to label objects and actions). We continue to be on the same medications as before and are waiting and watching with anticipation as her hair grows longer everyday over the completely healed scar. I think this about sums up her progress for now. For all of my epilepsy moms I did want to let you guys know that Camilla's resection was officially a right temporal lobectomy and right frontal topectomy - just FYI. Also, several posts back I asked you guys to pray for how our family would properly share Camilla's story and use her for His glory and He has answered our prayers. We feel we are being led to speak about our journey with Camilla to various different groups and organizations and God is opening these doors. Our first speaking engagement will be to share our testimony with Fairhaven Baptist Church on June 24th at the 6:00pm service. Brandon will also be speaking at the Brotherhood Breakfast on the 3rd Sunday in July and there are several other opportunities pending for us together and seperately. We plan to share the details of her diagnosis, the challenges that we've faced, how we've gone from enduring to enjoying life with a special needs child and how God has been there all along..."For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Camilla's Story

Camilla is such a blessing! In April of 2006, at just 6 months old, she was diagnosed with Infantile Spasms, a very rare and devastating form of childhood epilepsy. Despite numerous medications, the Ketogenic Diet, a Vagus Nerve Stimulator and a Corpus Callosotomy she continued to have daily seizures until undergoing a grid/resection surgery in March of 2012. She is still challenged by severe developmental delay and she doesn't speak but this sweet, energetic and happy little girl amazes us everyday with her grace, her beautiful smile and her contagious laugh.